KOCHI: When the Central Government issued an office memorandum making provisions to provide financial support to the patients suffering from rare diseases under the National Policy of Rare Diseases, 2021, the patients afflicted with rare diseases in the state were a happy lot. However, their happiness was a short-lived one since the state failed to satisfy one key provision mentioned in the office memorandum-the treatment can happen only in Centres of Excellence (CoE). Kerala does not have any.
“In the office memorandum it has been mentioned that financial support up to Rs 50 lakh will be provided to the patients suffering from any category of rare diseases,” said Dr Razeena K, South India Coordinator and director of Patient Empowerment Curesma Foundation of India. However, there is a catch. “The financial support will not cover treatment at every hospital,” she added.
“As per the guideline, the financial support will be provided to the patients for the treatment in any of the Centre of Excellence (CoE) mentioned in the NPRD-2021 outside the Umbrella Scheme of Rashtriya Arogya Nidhi,” said Dr Razeena. According to her, alas, Kerala doesn’t have any hospitals that have been declared as the Centre of Excellence.
“This provision would have been beneficial for a big community of patients suffering from all sorts of rare diseases had it not been for the lack of a CoE in the state,” said Dr Razeena. According to Manoj M, Kerala coordinator, Lysosomal Disorder Support Society (KDSS), though it has been said that the fund will be only a one-time thing, it would have been very helpful for the patients who are struggling to find the money for their treatment.
He said, “The sum would have covered all the costs in the first year of treatment of the diseases.” According to him, since it is near impossible for these patients to travel long distances, one can easily rule out going to the CoEs of the neighbouring states to get the benefits under the scheme. “So getting Centres of Excellence in the state has become a matter of utmost importance,” said Mohan.
Dr Razeena said, “Why should thousands of our patients go bereft of the benefits even as they struggle to get good medical treatment? The state government needs to take this up on war footing and get things done.” Kerala is the only state that doesn’t have a Centre of Excellence, she added.
“There are more than a thousand persons, ranging in age from infants to adults, suffering from rare diseases like Spinal Muscular Atrophy (SMA), Lysosomal Storage Diseases and Muscular Dystrophy in the state. There are at least 155 SMA patients and 44 LSD patients in the state as of now,” said Dr Razeena.
State’s appeal
Health Minister Veena George said, “The state’s appeal seeking declaration of Thiruvan- anthapuram Medical College, Kottayam Medical College and Kozhikode Medical College as Centres of Excellence is pending before the Central Government.” Even the Supreme Court has directed the Central Government to heed the state’s appeal and provide the same, she added.